Friday, May 29, 2009

Today, I learned several things in my practicum that I technically already knew. I know this seems like a contradiction, but it's really not.

Put another way, I got very concrete demonstrations of certain things that I already knew in the intellectual sense.

1. Nonverbal communication can be highly effective... especially if the person doing the communicating is a kid who doesn't talk, and the message is "I want you to sit on the spinny chair so that I can get on your lap and we can spin around." (I actually don't know what that particular piece of playground equipment is properly called... but the children who do talk tend to call it that.)

Nonverbal communication is also pretty good at conveying messages such as "More!" and "Faster!"... not to mention "No! I don't want to stop!"

2. On a related note, preschool children tend not to understand statements like, "I'm really, really dizzy right now and don't want to spin more."

3. I'm also a softie when it comes to kids... and find it hard to refuse their play requests no matter how dizzy I am.

4. Dry clean-only clothes do not mix well with activities that involve letting preschool children play with shaving cream.

5. Dry clean-only clothes also do not mix well with sudden rainstorms.

A clinician recently wrote me, asking about why people on the spectrum have trouble reading facial expressions. This is, of course, a gross oversimplification.

While it's true that autistics have difficulty reading the facial expressions and body language of neurotypicals, autistics often have considerably less difficulty reading the facial expressions and body language of other autistics. In fact, autistic individuals usually find reading autistic facial expressions and body language easier than neurotypicals do. There's a pretty good first-hand account of the sort of thing that I'm referring to here. The comments on that are pretty eye-opening, as well.

On a similar note, a discussion of ABA on the ASAN's discussion list included the following anecdote (reprinted with the sender's permission):

A neurotypical teacher (who gets along with me just fine) was watching me doing some academic testing a couple of days ago with a student who is classic autistic, and she had to repress her laughter while she watched... because suddenly I was speaking a totally different social language (as in, being the real me), and she later said it was "wierd" to watch me "lose all my feelings," and yet he and I were clearly playing around and having a great time (the kiddo was laughing quite a bit, especially when I called him on some of the get-out-of-work-free behaviors he had learned because people don't normally understand him and like any kid would, he was playing it to the hilt). It baffled her. Especially when he then started giggling uncontrollably after he discovered that I was very good at eye-contact tag (letting him lead and just giving the briefest of glimpses at each other's eyes while I played "hard to find" by making him work to "catch" my eyes... he was intrigued by an adult that didn't force eye contact and then would actually dodge it to create a game).

That led to a rather long conversation about this very thing... that there are multiple social langauges, including the toned-down version.

There are similar issues with people from different cultures (For examples, I suggest studying the initial encounters between Americans and Japanese following Perry; I believe there were similar accounts involving the Chinese, but I haven't studied them in enough detail) as well, so I ultimately believe that it's not an issue of autistics having difficulty reading body language (and/or facial expressions) as I believe it's a matter of people in general having difficulty reading body language that's different from their own.

Friday, May 22, 2009

There are a number of views of what autism is. They can, however, be roughly grouped into four -- or five, depending on how you look at it -- categories.

The first of these, what I term "disease models", view autism as something that someone gets. An example of this would be Generation Rescue's "mercury poisoning" theory. The GFCF diet, chelation, and a number of other "biomedical interventions" are based on this sort of view of autism.

While there are a number of issues with chosing a representative slogan and/or quote that summarizes these models, "love the child, hate the autism" (for a slogan) is pretty good. Another good quote, taken from the introduction to Jenny McCarthy's new book, is the following: "Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one.."

I do not think that I have to explain exactly how offensive this sort of thing is. Of course, I could be wrong... but determining that is part of what the comments are for.

The second category, what I call "disorder models", view autistic people as inherently broken. A number of these can be found in the academic literature... but the DSM is a prime example.

While most modern theories fit in this category, Autism Speaks's puzzle piece symbology is usually considered representative of this -- "Together, we'll find the missing pieces"... as if autistic people are defined by missing something (and, usually, this means "something that makes us human", implying rather strongly that autistics are therefore less than human).

The third category, what I term "strict-disability models", hold that autism is, at its core, an inability to do something (or some set of things). There is considerable evidence directly contradicting this, but people continue to endorse this sort of view... usually by confusing autism's DSM-IV diagnostic criteria (i.e. the "triad of impairments") with its definition (i.e. the underlying neurological and psychological differences that set autistic individuals apart from neurotypicals). Well, that or they go through some of the same intellectual contortions commonly used by supporters of disorder models.

The fourth category consists of what I call "difference models". These hold that autism is a set of neurological and/or psychological differences. Note that I do not say disfunction or disorder -- what distinguishes these is that they don't consider autistic brains (or minds) broken.

Finally, there are the social disability models. These define autism as a developmental disability based on the social model of disability.

Personally, I prefer the last two... and they're what the available scientific evidence supports. See pretty much any of Michelle Dawson's articles for review.

Thursday, May 21, 2009

At my practicum site, there's a period called "Quiet Time" or, alternatively, "Nap Time". It's a period after lunch when we pull out the cots, turn out the lights, and (usually) turn on some soothing music.

This is done because of the belief that preschool children need an afternoon nap. While many of the kids agree, many others... don't.

As of late, I've been implementing a non-contingent reinforcement strategy for decreasing one child's disruptive behavior during this time period. Translated into colloquial speach, instead of behavior analytical jargon, this means that I've been giving him some toys to keep him from getting bored and raising a fuss.

Apparently, he has nicknames for at least some of the puzzles in the classroom, too. One of them is particularly worthy of note. The puzzle itself is fairly simple -- a wooden piece depicting a dentist at work in his office.

I won't comment on the details of the program, in large part because of the fact that I haven't had enough time to read through that in enough detail to comment overmuch... and I have to return the book today, so I won't get to.

Besides which, there are things more important than the mechanics which need to be commented on.

Methodologically, the book is on shakey ground. The model was developed by longitudinal study of three autistic individuals -- hardly the best method in terms of external validity! Additionally, diagnostic standards are not provided (and details of diagnosis procedures aren't, either), weakening the external validity of the book's proceedures even further.

Additional challenges to the internal validity of the research methods used (which were purely ethnographic in nature) lead me to conclude that Ms. Wolfberg is an educator and not a scientist. As she's a (associate) professor of special education and not of psychology, this should not be a surprise.

That isn't to say that she doesn't provide emperical support -- it's just in the formofcitations. As I'm not familiar with the papers in question (or the book chapter -- chapter 7 if the link doesn't take you directly to it), I cannot comment any further on that. The fact remains, however, that the book focuses more on three case studies using the model than on emperically supporting the model. This is more of a "how to" book than a presentation of research... and it shows.

The largest flaw in the book, however, is not any of the above. The justification for teaching neurotypical play styles, as presented in the book, is highly flawed.

In essence, the book reasons, "autistic children don't spontaneously engage in neurotypical play. Neurotypical children learn a lot from neurotypical play. As such, we need to teach autistic children to engage in neurotypical play so that they can learn the things that neurotypical kids do from neurotypical play."

Of course, the book doesn't use those terms. Beyond the consistant use of "person-first" language (something that can be considered quite rude given the autistic community's repeated expressions of a contrary preference), the author does not use the term "neurotypical play", instead simply chosing to present a definition of the word "play" that explicitly excludes autistic play styles.

The problem with this sort of reasoning is the fact that autistic and neurotypical children have distinct (and distinctly different) learning styles and developmental patterns. As such, it cannot be assumed that autistic children, even if they were to play in the same manner as neurotypical children, would gain the same things from doing so.

Put another way, not all play has a nonliteral orientation (c.f. p. 30). There are additional problems with how the text defines play as "flexible and changing" (p. 29), because neither "flexible" nor "changing" is a dichotomous attribue. Besides, the popular game of taking a Slinky to the top of a staircase and watching it "slink" down manages to violate both of these rules (as written) while still remaining an activity that is generally regarded as play. Similarly, the fact that most autistic play styles have more in common with the Slinky or with dominoes than with neurotypical pretend play is not a reason to dismiss them from consideration as play activities.

Moreover, the reflexive dismissal of autistic play styles as "stereotyped activity" (p. 29) because they do not share certain elements of neurotypical play styles also dismisses the issue of the role autistic play styles play in the development of autistic children.

In short, the justification is extremely weak... and this is not a minor thing. The number of ethical issues that come into play is mind-boggling. Because of these problems, I cannot reccommend this book in anything approaching good conscience.

Friday, May 15, 2009

Sunday, May 10, 2009

I spent a good bit of yesterday attending a book signing at a local Barnes and Noble. The book in question, I Love U: Our Journey Through Autism, is yet another account of the experience of raising an autistic child. While there are quite a few of these (of varyingquality), Mr. Arnwine, the author, was quite respectful (even after finding out that I was autistic), and I promised him a review of his book from an autistic perspective.

To start off with, the book is fairly short (70 pages, counting the introduction; 71 counting the dedication) and pretty expensive (around $12 at most of the places I've seen it sold at) for its length. Given that the book is self-published, however, this can be forgiven.

Next, let's take the book's self-description. To quote:

I Love U, gives the reader an insight into our journey through the challenges and victories of our son's battle with autism. It shows a path from expected normalcy to the accepted reality of Shane's autism and his incredible progress. The book discusses our experiences with stories, from our daliy lives to illustrate the signs we observed, which led to an early diagnosis. Each story is preceeded with the signs to look for and within the story, the signs are highlighted. This book is admittedly a short read.The goal is to show the reader that with early diagnosis, treatment, and therapies we saw incredible progress with Shane.

I promised Mr. Arnwine that I wouldn't be overly critical of his typographical mistakes, so I won't comment on the three I noticed when skimming the above paragraph. Objectively speaking, however, it's worth noting that the book wasn't professionally edited.

More importantly, however, note the use of the phrase "battle with autism". Beyond issues of how offensive this type of description is (can you imagine the feminist movement's reaction to a parent describing their daughter's "battle with femininity"?), there's the fact that it's pretty obviously a case of reification error. The fact that such language encourages mistakes of this sort is a large reason why the autistic community dislikes "person-first" language (e.g. "person with autism" as opposed to "autistic person"). A more appropriate -- and accurate -- way to say what I suspect that Mr. Arnwine meant would be, "struggles with life in modern society as an autistic person".

Another point that needs to be made is that Mr. Arnwine attributes his son's "progress" to the various interventions his child recieved. Technically speaking, maturation is a major challenge to the internal validity of this sort of observation.

To put that in plain English, it's hard to tell what was Shane learning from the interventions and what was simply a result of Shane growing up. Additionally, no definition of "progress" is given in the above, leaving ambiguity as to what exactly he meant... and, as appropriate therapeutic goals are very much under debate, this is worth noting.

Similarly, claims of the importance of early intervention are usually based on Lovaas's "classic" 1987 study, a highly flawed study which evaluated a highly unethical intervention using invalid measures (among other methodological problems and a failure to report critical information). A followup study is also frequently cited on this, but it also suffered from a similar lack of methodological rigor... and used the same, invalid measures. While I could go into a detailed critique of the relevant literature, the book does not even reference it, instead accepting the importance of early intervention as a premise.

I'm not saying that early intervention is bad, or that Shane didn't benefit from it. I'm saying that the science here is questionable at best. There's also recent research that suggests that the "stereotyped autistic behaviors" that early intervention programs often aim to stop are developmentally important.

Then again, the research there often doesn't even consider that possibility -- it's abnormal (i.e. not something that most people do) and therefore, to the people doing that research, it must be stopped. The fact that doing so causes considerable harm to the victim of their so-called "therapies" is ignored.

In other words, it's more important to insure that a child gets good intervention than early intervention. The sheer number of absurdly bad interventions is mind-boggling. Shane seems to have lucked out in this regard... but many other children don't.

To the book's credit, there is a brief account of a run-in with poor therapy on p. 38. Specifically, it was with incompotent behavior therapists. As someone who's had such an experience himself, I congratulate Mr. Arnwine on giving them the metaphorical boot.

I bring these issues up in the context of the book summary because all of them become repeatedly apparent when reading the book. Were I to address them in the context of every chapter in which they pop up, this review would quickly reach an utterly absurd length.

Judging by Mr. Arnwine's verbal comments, however, he had to get the definition from somewhere... which leads into issues of the availability of good information. While the autistic community has worked hard to create a number of excellent resources and to make them easy to use, we haven't been so good at making them easy to find and/or giving them publicity. I sincerely regret that.

Fixing it, however, will be a long, difficult process. I guess I have a rather large task ahead of me, especially given the abundance of available misinformation.

There are also some specific points in which the author appears not to fully understand autistic behavior.

For instance, Mr. Arnwine also doesn't seem to have a very firm grasp on the difference between a tantrum and meltdown. While meltdown often looks like a tantrum, especially in a young child, they're extremely distinct phenomena.

From a more practical viewpoint, meltdowns are characterized by skill loss, a subjective feeling of being overwhelmed, and (often) a need to escape or to retreat to a "safe" place. Tantrums are something else entirely.

Regarding Shane's childhood "flapping episodes", hand-flapping seems to be a response to excitement and/or happiness in autistic children. Contrary to Mr. Arnwine's initial impressions, they are/were probably not signs of distress. Shane's thrashing in response to his head getting wet, however, almost certainly was.

Regarding Shane's sensitivity to things being placed on his head and/or his hair getting wet, the head is one of the most important parts of the body for thermal regulation. While I can't comment in a clinical capacity, it certainly seems that Shane is responding to things that effect the regulation of his body temperature.

Oh, and I did the shirt-tag thing, too -- well into high school. They itch.

Mr. Arnwine also mentions the play activity of lining up objects. While it's a stereotypical autistic play activity, it also appears to be important to autistic development. Rather than being a source of worry, parents should learn to enjoy watching their children do this -- in much the same way parents of neurotypical children enjoy watching their children explore and try to make sense of the world.

Finally, the "high tolerance for pain" thing is greatly oversimplified... but that's not a can of worms I want to open up in a book review.

That said, Mr. Arnwine very much has a positive attitude for a parent... if somewhat misinformed. For instance:

Since I was so open with Shane's diagnosis, I was commonly asked, how did he get autism? Honestly, we never spent much time or energy on the cause, we focused on treatments and therapies. I have become active in Shane's school and learning his rights to become the most affective advocate for him, which I feel is my most important role to support him.

Yes, it's something of a grammatical mess... but, again, I promised not to be too critical of the grammar. Suffice it to say that I'm going on the assumption that while "affective" is probably accurate, "effective" is probably the word Mr. Arnwine was going for.

And, while this is a very healthy attitude overall, there are a number of embedded assumptions which are problematic.

First off, autism isn't something you "get". This is another example of reification error, as I explained above. Later in the book, Mr. Arnwine briefly mentions the vaccine fraud that's spreading around, for instance (in a "maybe it's true" sort of way). This is fully inconsistant with his overall view of autism... which, from our conversation, is that of something which cannot be separated from the autistic individual. Reading Jim Sinclair's "Don't Mourn For Us" would probably be very helpful in understanding this issue.

Despite this, parents rarely read that essay unless they somehow -- by coincidence, usually -- run across ANI.

His language also manages to imply that he's targetting Shane's autism (as opposed to Shane himself) with "treatments and therapies". This, in turn, also implies that autism can be separated from the autistic... something that's not possible.

In conclusion, I Love U is a brief case study in how families deal with the arrival of an autistic child. Taken as such, it's a pretty decent read.

Saturday, May 2, 2009

I have a younger brother. I don't like talking about him, especially in a public forum, but he exists.

There's a reason I don't like talking about him, too. Specifically, the current state of our relationship is a very painful subject for me. There is a very good reason for this.

Specifically, he will not respect any boundaries in our relationship. Whenever I tell him that I am not comfortable with something, whenever I ask him to stop something... he takes it as encouragement to continue. This pattern has continued for more than a decade, progressively getting worse and worse. There was even an incident where he wouldn't even respect the boundary represented by a locked door as I lay curled on the ground inside, crying and begging him to leave me alone.

If you're reading this as "he broke the door down", you are entirely correct.

I do not feel safe -- physically safe -- in his presence. I do not feel comfortable when he is so much as in the same building.

The latter is mainly because he's tended to disregard the former... and sneak up on me to initiate physical contact, usually in the form of a hug. If I don't feel safe when he's in arm's reach -- and he knows this -- how the Hell can I regard this as anything but a hostile action?

Meanwhile, my mother is in denial in regards to the nature of the situation. She insists that my brother loves me and cares for me... and that this somehow invalidates all of the above. She has repeatedly laid the blame for my "outrageous" behavior (e.g. exhibiting a startle reflex when he sneaks up on me, trying to stay out of arm's reach, leaving the room when he enters) entirely on me. She has also made repeated efforts to force us together despite the fact that I've directly told her (in writing, no less!) that her attempts often render me unable to focus on my work for days.

Her last such attempt was made on the day my final projects for my last semester's classes were due. The less I say about feelings about that, the better.

I bring all of this up because of their impact on my feelings regarding a recent statement by Tony Attwood, made in response to an ASANpetition. When boiled down, the general gist of what he's saying boils down to, "Wives who cannot accept their husbands for who they are and/or fail to understand the ways in which their husbands express their emotions may become depressed and feel deprived of affection"... only formulated in a way that places the blame squarely on the husband.

The sheer absurdity of this, especially in this context, is hard to describe. The outrage I feel at this is equally so.

Disregarding the fact that any relationship goes in two directions, individuals on the spectrum tend to recieve an absurd amount of blame for things that, frankly, were not their fault. As I've mentioned above, I have personal experience with this sort of thing.

Dr. Attwood... for perpetuating psychosocial stigma towards your clients, for directly causing harm to the very people who your profession is supposed to help, and for using your professional reputation to help legitimatize a group of the worst clinical frauds I've ever seen... shame on you.